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chefdeborah

Distinguished member
Joined
Oct 23, 2009
Messages
158
Reason
PALS
Diagnosis
10/2009
Country
US
State
Georgia
City
Peachland
My name is Deborah and I have ALS. I have had a hard time saying that now that I know what it is I have been fighting for the last year. I have had tests for the last year and no one could tell me what was going on. I had slurred speech, swallowing problems and problems breathing. I finally went to Mayo Clinic in Jacksonville and got my diagnosed on Wednesday of last week.

I am having a hard time with this diagnosis. I guess I am going through the grieving process. I guess I am saying all this to say that I am glad you are here to help me through this.

I have always been an active person, a chef by trade, and also a hard worker at my church. I crochet and have a Yahoo charity group who crochets, knitss and such for charity. I can't stand to think about not being able to do any of these things.

I think I could take not being able to talk (even though I can talk the oink off a pig) more than I can stand to think about not being able to cook or crochet.

Thanks for letting me vent!

deborah
 
Welcome to the forum Chef! Sorry you have to be here. Let's pray you will have slow progression so you may be able to enjoy your activities for a long while.

It is overwhelming when first diagnosed, for sure. Hopefully you will find support from your family and friends and this forum.

My husband had the opposite reaction about the loss he has experienced. He would rather it have been his legs to go first than his speech. But, he's grateful to still be here!:p

I had to look up Culloden, hadn't heard of that town before. Sounds like an interesting, historic little place to live. Curious as to why you went to Mayo/Jacksonville instead of Emory/Atlanta.

Good luck to you!

PS - we live out in the country in NE GA.
 
Deborah ... I'm so sorry for your diagnosed, and that you have had to join our forum. But I hope you will find the same support ... and yes, laughter and enjoyment ... from our little family that the rest of us do.

I also started with bulbar symptoms 4 years ago next March. I never was much of a cook, but I can still get around the kitchen (barely), and I like to paint, so I enjoy working with my hands ...and it's hard to lose function.

It took me a loooooong time to adjust to (accept) my diagnosed. Don't try to rush the process. It's a major life change, and a tough one. But I will say this, that I am still living a good life (with some major exceptions and challenges!) and having a pretty good time. Hang in there, and please share as much as you need to.

PS ... my neuro says I have "moderate" progression. We are all different, but you will have a lot of meals still to prepare and enjoy! One thing ALS does is really make you enjoy the moment!
 
Went to Emory for MONTHS! They shuffled me around to every kind of neurological doctor they could find! and ran every test they could! No diagnosed! So I just got my GP to send me down to Mayo....two visits, 7 days, a diagnosed! I might go to the ALS clinic there after I f/u with Mayo one time. Does your husband see Dr. Glass?

Culloden is a podunk town and not even a small dot on the map. We live out in the country nearby!

I am going to NE GA next week!

deborah
 
Thanks for the welcome BethU. I hate being here too, but I am glad that there is a place like this where I can vent to someone who understands what I am going through. I have a great support group of friends from church and a family that is very supportive, so I know I am not alone. But, I feel so alone right now! I think about what is to happen and what might happen, and I don't know what to do about it. I feel so horrible for my children and my husband, and I can't talk much because I can read a grocery list and cry (of course you know that is a part of bulbar palsy) I want to help them come to grips with the diagnosed, but I haven't done it yet. Please tell me what to do to figure out what to do next!
deborah
 
deborah,

My husband sees Dr. Glass. It really is becoming a pain to go to Emory, but what do ya do?

As far as the crying, my husband is on Lexapro and it has helped tremendously. Your husband may want to check out antidepressants also to help get over the shock of your diagnosed.

Our son is 9 years old and we just give him info on his level when we feel we need to explain something. It's just a normal thing for him now since this has been going on officially for just over 3 years.
 
There is all the difference in the world in Emory and Mayo Cllinic. But, I understand about the mileage. We are not going to be able to go to Mayo on an ongoing basis. There is also a clinic in Augusta, but I know that is a long way for you too. I hate to go back to Emory to tell you the truth.

Our children are grown. We lost our youngest daughter at age 19 back in '98. We have two other children, a boy and a girl. They are taking it pretty hard. My mother too...she is 80. I try to be strong for them, but I am having a hard time doing it.

What is so funny, I guess you would call it that, is our youngest daughter had brain cancer. You would think that would be enough, then she got killed...and now this. I just don't know how much more I can take.

deborah
 
Well, all I can say is that there will be a special place in heaven for you and your family.

For some reason it seems that a lot of pALS have such hardships to bear. But the courage they show in the face of tragedy is to be admired by everyone.

If you stay on this forum long enough, you will understand and come to know so many strong people. You will then wonder what the rest of the world has to worry about! LOL I have no doubt you are one of the strong ones.

Off to watch the Falcons vs Cowboys!
 
Deborah, welcome to the forum, sorry you have to be here. I am a bulbar onset PALS too so please know that you are not alone in this. There are no easy answers to any of our problems and I wish that I could offer you any way to get through what you are feeling right now other than to say we know what you are going through.

Things are better now for us than they were even a few years ago, because even though there is no cure yet there are so many new technologies that can make it easier for us to eat, talk and move.

And even if you can't eat you can still cook and you'll probably be crocheting (is that word?) for a long time.

Take care
Barry
 
Deborah, it is a hard thing to faces a diagnosed of Als and you have had to face the loss of a child. You will find away to deal with this,make each day full of fond memories for you and your family and may peace be with you.
 
Hi Deborah,
I'm so sorry about your diagnosis. I was recently diagnosed myself and this forum provided me with so much support and inspiration.
I'm surprized that Emory didn't diagnose you. Did they do an EMG?
Did Mayo used different diagnostic tests?
Best wishes, Erica
 
Deborah, I am so sorry that you are faced with this diagnosed. My Husband is also Bulbar. I loved your "talk the oink off a pig"! Have you been in touch with your local MDA and ALS Association? They were my lifeline until I found this forum and these fabulous, incredible souls. If you contact MDA they will help you do a "voice banking"-do it asap :] There is just so much to do when you are first diagnosed and it is all so overwhelming. I contacted MDA and ALS first. Then I started researching like crazy. We applied immediately for SSDI because it takes 6 months. We took care of the living will, durable power of attorney and now we are in the loving the moments stage. Our baby just turned 13. Our older children are all adults. The inital shock was very overwhelming. We still have moments of tears but there are also moments of the greatest joy. I wished that I lived closer to you and CJ so we could come to visit and have a meal prepared by a CHEF! :] What is your favorite thing that you create in your kitchen? What kind of things do you crochet? I have a new grandbaby arriving next May and I would love to create something for "her" [wishing and hoping for a baby girl!] You will find that this forum is the best thing that will happen to you. Incredible support from fabulous people that totally understand what you are living with and that is like balm to a wounded heart.
 
Hey Chef,

Took the wind out of your sails didn't it. You just need to start on a different tack.

I am sad that you were diagnosed with such an awful $%Y$%^*&$ disease.

Now , enough of feeling sad and blue. Its time to do the things that build memories. Being a chef , you had the heart to get through the training. You have the drive to make things and get others to make things for charity. I looks like you have a sense of humor. How do you talk the oink off a pig ?

There are a lot of people here with a wealth of experience. We are not doctors , well most of us are not. Please feel free to come and vent and ask anything you wish. We are here to help.

Its all about a positive attitude (which you have gobs of, ya know) and maintaining your energy levels. Smile , someone will think you are up to something.

Glen
 
Hi Chef,
I am so sorry to hear about your diagnosed,Larry & I are going to the Univ. of Il in Chicago Thurs. The doc is an ALS doc Larry doesn't have a diagnosed as of yet other than upper & lower motor neuron disease. It's been three yrs of tests etc.I know it is a shock to hear the words AlS ,I pray that you will have a VERY slow progression. I too lost a child he was 43 yrs old & died of cancer he was my only child.I didn't think I could go on. but God has other plans. I will pray for you & your family.LOVE LIVE LAUGH. GOD BLESS
SHARON
 
Chef Deborah,

Welcome to the forum. I like to make crepes. I also like to eat them.

Zaphoon
 
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